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Old 09-06-2012, 08:54 PM   #16
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Re: Strange symptoms, waxing and waning...

I went out yesterday for my first meeting at the university I'm at this year, and as I started to walk to the train I got really weird feeling come over me. It was like I wasn't there, or like everything was a fairy tale. I learnt later that it was derealization, and that I was having a panic attack.

I thought I was going to die again, just like my first attack with vertigo. It just felt so weird! One moment I was fine walking along with a slightly off balance feeling (result of the vestibular neuritis) and then I was having this pressure behind my ears and then everything seemed to become totally unreal, and then it was like I was not there in person (depersonalization) and then it felt like I was going to pass out or something because my legs went like jelly and it felt like I was going to fall over. I felt my head and I was quite warm to touch, but nothing major seeming though I was just walking.. and it went away after 5-10 minutes or so. I checked my pulse when it was happening and it was beating so fast.. palpitation fluttery feeling.

It was obviously a panic attack because of the vestibular neuritis. I hear people with labyrinthitis and vestibular neuritis are a lot more likely to develop panic attacks as a result, due to the mixed signals between the world moving about when you either move your eyes, or even if something is moving past you (visual information in your environment) and your body's way of keeping balance.. hence the reason why people with labyrinthitis and VN are wobbly even after the infection has left.

This is a long post, but I have a few things to say that may help in some way. so please bear with me and read on!

The reason for the lapses in recovery is due to something called the clamping effect. It's where after your inner ear infection your brain recognises that there's been some damage to the nerves in there, and so it shuts off those signals temporarily so that you can cope without the vertigo. When the brain releases this clamp, you start to compensate. This is why people feel good some days and crap others. It's so crap that it happens like that. It builds your hopes up and just when you think its all over, it comes back! But at least you know now why it happens..

So treatment would help recovery right? Well.. I think to recover you need that process to happen faster somehow.. And the only way to get that to happen is to walk outside more. I say this with a bit of caution though, because Im no doctor, just a normal person like everyone else suffering this on here. I don't want anyone to fall and get hurt, so be careful! But compensation from a no nonsense approach is the only way to get better faster... and there''s only two ways I can see.. maybe 3..

the first like I say is to walk outside more.. Dont try go about normal activity outside.. as you feel better.. do a little more and increase it as you get better.. eventually it will heal quicker than if you didnt do it at all.

the second way I see is to do exercises which are usually prescribed by a specialist in Ear nose and throat fields. They will get you to do exercises which provoke the vertigo or dizziness so that the brain is forced to compensate for the difference. This is why if we move in a certain way you may get a quick head jolt feeling of vertigo or the room may spin and you may feel nauseous. There are a few videos on popular video site which if you would like to know about I can message you. Just PM me. I cant say it on here due to funny forum rules or something I guess. It's free anyway, and thats what matters.

The last method of recovering fast is to permanently somehow keep that clamp from the brain in place. But this would cause deafness in one ear, and would be irreversible of course. Dont know of any medical procedures to do this, but as far as I can see, it's totally stupid.

Quickest may be walking outside more and more. Go with someone else, so you have support and maybe take a walking stick or crutch to support you if you start getting bad, and go home to get more rest. Eventually it will go!

Stress is a big one in this, so keep it low. Even hidden stress can cause panic attacks and anxiety.. so maybe meditation could help or perhaps mindfulness to those who don't believe in meditation, but essentially they are very similar anyway! These are both used in Cognitive Behavioural Therapy (CBT) too, and are used to treat anxiety disorders.

Another thing I found out recently was that it seems because I have Aspergers Syndrome (AS) which is a form of Autism, I also have a low cortisol level most times, and this can cause some of the symptoms I experience. Vitamin B5 helps me it seems.

Ginkgo Biloba will help vertigo, and again I cant endorse its use because Im not a doctor, but it is totally natural and you can get it on-line or from a health food shop where ever you are. It tends to be slightly expensive, but I heard at least one lady on here use it after getting vertigo and it helped her! Remember though, do not rely on medication or this supplement to heal you from this unless you have a bacterial infection of the inner ear, in which case you will need some kind of antibiotic from your doctor, and no amount of rest will help you. This will only aid you to get back to some sort of normal life. It may help, but I don't know if it will or not as everyone is different. My advice is not to go spend a lot of money out on a bottle of these things if you don't know if they help or not. Try get a small bottle if you want to try them. Common sense sort of thing. Boost your immune system too, Vitamin C and all the B vitamins can help with that. Eating foods rich in these will be great. Here's a list for people to look at:


Vitamin C:

Oranges (or orange juice freshly squeezed though!)
Lemon and Honey may help you due to the anti bacterial and anti inflammatory nature of these)
Limes also contain high levels if you can include these in your diet somehow in a recipe.
Grapefruits - Be careful eating any of these foods if you take certain medications, as you may thin your blood too much, or it may cause reactions. Call your doctor to check first!

All of the berries (strawberries, raspberries, gooseberries, blackberries etc) are usually good sources of Vitamin C and other nice vitamins too. Good for recovering your immune system, which I'm sure you'll need, as you most likely got the inner ear infection from having a lower immune system anyway. It cant hurt to eat healthier. I have to say, check with your doctor if you have any medical conditions or other take medications, and I cant be held responsible. That's my disclaimer, as I know that I personally see food as medicine! Eating junk foods are not going to help you recover, as these all stress your body! I have never seen it any other way.

Seek the guidance of a professional medical person before changing diet around, and before taking supplements or medications. Im sure they'd be safe if they're natural and are low dosed, but seek that advice first before taking them! I hate red tape as much as anyone else! Common sense!

I hope this helps, I've looked into this a lot. I'm an avid researcher, and I love seeing people happy. I hate seeing anyone ill, and I hate being ill also! I'm here for support if you want to talk at any point too. I plan to stay on these boards even after I've recovered fully also to help people as much as I can myself with my limited energy and motivation.

Have a great day out there
Chris

Last edited by boic; 09-06-2012 at 08:57 PM.

 
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Old 09-06-2012, 11:59 PM   #17
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Re: Strange symptoms, waxing and waning...

Hi there,

I am at week 25 with this horrendous illness. Mine hit me like a lightning bolt and I was bedridden for a month and a half. I now can get up and move around. Some days I can drive, others I can't leave the house. Last week I had 4 good days where I felt normal, but for the past week it hit me hard again. Severe nausea, dizziness, unable to balance, neck and shoulder pain.
I am at my wits end and feel like I'm spiraling into depression.
I'm unable to function normally anymore and I don't know what actually brings the spells on.
I have 53% permanent left inner ear damage and all the specialists keep telling me is it will take 6-12 months to compensate.
I originally was taking stemetil and Valium which I only resort to when it is extreme.
I now have acupuncture weekly and taking Chinese herbs. Started neck, spine and shoulder exercises. It does seem to help although this past week has been a huge struggle.
I am booked to see a balance therapist next week, so fingers crossed that will also start to speed up my recovery.
I will post an update and let you all know.

I am so glad to have found this site as this is the cruelest of illnesses which leaves you feeling very isolated.
Wishing you all good health and a speedy recovery.

 
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Old 09-07-2012, 07:51 AM   #18
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Re: Strange symptoms, waxing and waning...

Hello All,

Curious if anyone is experiencing this...here's my background. I had acute onset vestibular neuritis in June. The testing showed normal balance and hearing, however my eyes were not tracking properly. In the past 12 weeks I've had a lingering issue with my vision when looking down...the pavement looks wavy and my depth perception looking down is off. I normally don't have problems any longer when going to stores, only infrequently. I do have problems walking outside with the pavement issue and I get a headache after about a 5 mins walk. within the past 3 weeks I've started to get frequent headaches/migraines. Working on the pc for a length of time will provoke a headache. I don't have a history of headache...this seems to have materialized after the neuritis. I see a neurologist in 2 weeks.

This has become depressing not driving, rarely leaving the house (I'm new to the area and don't know anyone here) and when this will all end and I will get back to a normal life. Will I get back to normal is the other question. I get major anxiety when I have to go somewhere not knowing if the symptoms will arise. I had 5 days with no symptoms...I actually forgot about these miserable symptoms. Then on the 6th day...wham...a dizzy migraine all day.

Thanks to all for the support and looking forward to a quick recovery.

 
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Old 09-07-2012, 08:20 AM   #19
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Re: Strange symptoms, waxing and waning...

Hi there
How awful these symptoms are for everyone.
On the positive its gr8 you have had days at a time without the symptoms at all and I look forward to the that myself ! how long have you been suffering ?not leaving the house is one of the most depressing things as were all social animals and I have some days in tears I'm soooo depressed by it so totally understand,I have been driving a few weeks now which has helped but the problem is when i try to walk as I walk so slow and with a wide gate and am unsteady and I also still cannot look down or roll on right side,or do sudden head movements.
There is alot of info on the net and some very helpful stuff,I have recently been prescribed some other meds to try but am reluctant as have read it can slow recovery down so am undecided whether to take them or not and no one has replied to my thread who has had them !,I also do not have a diagnosis properly as yet and have not been referred to anyone either,am back docs on Monday for my MRI results and think i may ask for a referral to someone who can help ?.
My thoughts are with you and as you say hoping for a quick recovery for us all but already thats looking unlikely by what I read .x

 
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Old 09-07-2012, 08:51 AM   #20
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Re: Strange symptoms, waxing and waning...

Hi Florida,

Thanks for the reply and encouragement. It's been 12 weeks...seems like an eternity. I would not wish this on anyone, but there is consolation in knowing you are not alone. At times I re-read the posts to reassure myself that the symptoms are normal and I'm not going crazy. Twice I've had a 5 day period with no symptoms which I am grateful for. Both times were followed by a bad day which reminds you that this is not over I haven't tried to drive yet...a bit scared. I tried at the end of 4 weeks and got a terrible migraine. It seems that in the past 8 weeks my vision is off. Focusing can be difficult at times and my eyes don't seem to be in sync with my head/brain. Being housebound is horrible and the neighbor has to walk my dog.

I too don't have a proper diagnosis yet. When in the hospital in June, they diagnosed vestibular neuritis. After 6 weeks when I was still having symptoms, I was sent to an ENT. He diagnosed the eye movement issue and speculated about vestibular migraines. Now on to the neurologist. Hoping to get a diagnosis and direction on how to overcome this.

My thoughts will be with you for your appt on Monday...I'm sure all is well, otherwise they would have responded much sooner. Stay positive and chat anytime you need to talk!

Here's to everyone having a great day!

 
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Old 09-07-2012, 10:32 AM   #21
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Re: Strange symptoms, waxing and waning...

I understand how frustrating this is for everyone, I am getting very angry at the minute as well because I hate feeling trapped or unable to lead a normal life. I have also been having headaches from waking up, they seem to move around my head throughout the day. I notice them much more after been going for a walk.

Does anyone else feel kind of paraylsed in the evenings? I seem to get really anxious and tense and worried asif something horrible is going to happen - seems to gradually build up, really takes it out of me and makes everything so much worse. My brain is on such high alert that the slightest sign of any pain or new symptom seems to put me back on edge!

One thing is for sure, when we all get better - no matter how long it takes, or how hard it is - we will all be stronger people from it, and no doubt appreciate life so much more. Just been able to take a little walk and breathe some fresh air makes me realise how much I want to live and fight this, something most people just take for granted - including myself before this started.

 
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Old 09-07-2012, 11:11 AM   #22
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Re: Strange symptoms, waxing and waning...

Hi Jimmie,

I totally understand how you feel. I too am overly aware of every pain, sensation or odd feeling, and worrying that something bad is going to happen. It's a vicious cycle...the more we are stressed about the symptoms, the more we have symptoms.

My morning/daytime is the most difficult. First thing in the morning I scramble to get showered/dressed...just in case something happens. It's the anxiety of never knowing when this may get bad again. The episode of acute vertigo that landed me in the hospital is still really vivid. I guess at night I sit and watch tv and am occupied, so I'm less stressed. Trying to keep busy will take your mind off the symptoms...I keep trying to garden and even clean just to occupy myself. A short walk for me is 5 mins and I usually have a headache afterward. Sometimes I can't manage that because the ground looks wavy. I'm going to make an attempt to hit golf balls tonight. Haven't played golf all season and I'm angry about that!

I think the best advice (and I'm not good at listening to myself) is to stay busy, keep pushing to do more, be positive and be thankful for even small progress. This unfortunately seems to be a situation where time is the cure.

But you are right, the simple things in life that have been temporarily taken away from us, we can now appreciate more. I try to keep the perspective that many people have it much worse and I will recover in time...although most days I don't succeed at that.

We will recover and will look back at this and be grateful for the support we received from strangers who pulled together to help one another when someone was down and for life lessons learned about the importance of things we've taken for granted.

Cheers!

 
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Old 09-07-2012, 02:33 PM   #23
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Re: Strange symptoms, waxing and waning...

Hi florida31,

I have had an MRI of my neck and head and everything came up normal except for a massive polyp on my right sinus which I have been told has nothing to do with the vestibular neuritis. I also went to a balance and hearing centre. All tests were normal except for the caloric test which showed 53% permanent damage to my left inner ear. The medication
I have taken started with Serc which didn't seem to help at all and is extremely expensive. I then was given a shot of stemetil which helped immensely for 2 hours then I went back to the inner terror. I was prescribed stemetil and Valium and would take a Valium before bed for about 2 weeks but I weened myself off it as I didn't want to become addicted. Stemetil I take when the nausea is at its extreme.
Now I drink ginger tea for the nausea and take 1/4 of a Valium when the bout hits me really hard like it did yesterday. It has been nearly 6 months and yesterday I cracked really bad for the 1st time. Inconsolable crying, really dark thoughts and a feeling of just giving up...not wanting this anymore. I took a 1/4 of Valium and rang someone to come over and be with me as I was scared of how dark a place I was in.
Today I am feeling a bit better albeit not jumping out of my skin.
I use to be extremely social and active, ski instructor, tennis 3 times a week, gym, loved to cook ( now rarely due to a severe loss of appetite).
Had to resign from my job do now a loss of income. The experience is horrendous but I keep thinking the universe is trying to tell me something...don't know what though.
I notice that there are no posts about people that have recovered from this, maybe because they are out there rejoicing and living every moment as they are more appreciative of life and how valuable their health is that they forget all the bad stuff and don't want to relive it...I don't know.

I'm just glad we can be a support to one another. I hope I have answered a few of your questions.

 
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Old 09-08-2012, 12:49 AM   #24
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Re: Strange symptoms, waxing and waning...

Hi there

Wow 12 weeks ,that's awful, the thought of another month of this so depresses me and there are others on here who've had it longer .
it appears that yr symptoms seem to trigger headaches ! so surely that will help in a diagnosis ? I know someone who has MAV and yr symptoms sound exactly the same !,I always have headaches that last for days at a time and live off pain killers which I'm sure don't help me.
I am very fortunate to be able to drive now but the tricky part is when I get out to walk lol .
Having all the support on here helps so much and am so grateful to everyone as its a gr8 network.x

 
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Old 09-10-2012, 05:20 AM   #25
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Re: Strange symptoms, waxing and waning...

Hi Florida,

Just checking in with you...if I remember correctly, you have your followup appt today regarding your MRI. Good luck and my thoughts ate with you. Keep us updated.

 
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Old 09-10-2012, 11:45 AM   #26
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Re: Strange symptoms, waxing and waning...

Hi there Teetime

Thank you so much for remembering ,all good and MRI was clear and the doc questioned me to see if I was taking the new meds he prescribed ! I admitted I hadnt been ! and said I was reluctant but he reassured me it is safe and said I need to give it a go ! so i have started it today and willl see how it goes,I did ask the doc how long do we do carry on before going down another route ? but didn't really get an answer so will just have to see how I go !.
Hope alls ok with you and thanks again.

 
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Old 09-10-2012, 11:58 AM   #27
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Re: Strange symptoms, waxing and waning...

Hi Florida,

I'm so happy for you...great news that all is well with the MRI! While there isn't a defined timeline to have this dreaded thing over, at least your tests are good and there isn't anything major. One less item to be stressed about and hopefully on the way to recovery. Keep trying to stay active - everyone says that is really important for recovery.

I had a good weekend after a couple bad days last week. I played golf yesterday which was huge for me. I've been so mad that I haven't been able to play all summer. Now just sitting on the porch with my dog Thanks for asking!

 
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Old 09-10-2012, 10:47 PM   #28
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Re: Strange symptoms, waxing and waning...

Hi Teetime
Yes yr right but as everyone else states,we just want some answers to all of these symptoms !.
Its great you managed to play golf ! and all that movement it takes means you must have been having a good day ,I did't get to be too active yesterday due to visitors on and off so need to try and do a short walk today but yesterday I felt very tired and think it maybe a side affect of these new meds as it says they can make you drowsy so was asleep by 9.30pm but hoping its not them ! will have to wait and see ! am not convinced these will make a difference but doc insists I try them.
Hope you continue with more good days and I cannot wait for the day I can walk properly and sleep on my right side lol.

 
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Old 09-11-2012, 08:34 AM   #29
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Re: Strange symptoms, waxing and waning...

Hi Florida,

I know how you feel...I can't get answers about the symptoms, when a full recovery will happen or even a specific diagnosis. Today is 3 months since I ended up in the hospital and i feel like there has been a lot of wasted time not getting answers. I'm seeing a neurologist Monday, if I don't get some answers, I'm going to book an appt at a balance and dizziness center. Maybe specialists would be a better option. What are the meds ur taking supposed to do for the symptoms? A lot of the meds make you tired or spacey, just be careful. I'm not a fan of taking meds...just my personal issue. I have bad reactions to most meds. Hope you have a good day and get out for a walk. How long of a walk are you taking and do you go alone? I'm slowly taking short walks, but maybe I should push harder

 
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Old 09-11-2012, 01:46 PM   #30
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Re: Strange symptoms, waxing and waning...

Hi teetime
The meds he has put me on are for the treatment of Meniere's disease so I've read and are supposed to reduce the symptoms of ear pressure/vertigo and tinnitus ! I will give them a week and see how it goes !and as you say I too am not keen on taking meds but agreed eventually to give it a go .
I have only been walking a little I suppose,I did a on the beach a little on Sunday but only about 100ft and supermarkets are hard but I keep trying and if I'm honest most of the time I'm out I haven't been on my own ! and haven't been out today but am aiming to go out on my own tomorow !!!,scary lol. as its my husbands birthday at the weekend so need to do something lol !
I have to say I have def improved over the last 2 weeks but seem to be stuck at this level so who knows how much longer !
here in the uk the national health service (our health care) is kind of supplemented by the government ,however 11% it is taken at source from our pay but this means everything takes forever and drs are reluctant or seem to be to refer on ! hence why I probably haven't been !!!!,anyway enough politics lol .
I do hope yr apps go well and you can get some answers so keep us posted as its good to get others experiences.

 
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